Quality statement 1: Annual reviews

Quality statement

People with cystic fibrosis have the results of all assessments they have had during the past year reviewed annually by a specialist multidisciplinary team.

Rationale

Cystic fibrosis is a multisystem genetic disorder that needs regular monitoring and a range of assessments for effective management. Assessments are undertaken by different specialists and can take place at different times to reduce the burden on the child, young person or adult with cystic fibrosis and their family or carer. An annual review brings together the results of all the assessments. It enables the multidisciplinary team to understand the progression of the person's disease and make changes to their care to prevent or limit the symptoms and complications of cystic fibrosis.

Quality measures

Structure

a) Evidence that cystic fibrosis multidisciplinary teams have professionals with specialist expertise in the condition including a paediatrician or adult physician, nurse, physiotherapist, dietitian, pharmacist and a clinical psychologist.

Data source: Local data collection, for example service specifications. NHS England service specifications for cystic fibrosis cover multidisciplinary team composition and require providers to demonstrate they are meeting requirements.

b) Evidence of local systems to identify and invite people with cystic fibrosis to have comprehensive annual reviews.

Data source: Local data collection, for example service specifications. NHS England service specifications for cystic fibrosis cover annual reviews and require providers to demonstrate they are meeting requirements.

Process

Proportion of people with cystic fibrosis who have the results of all assessments they have had during the past year reviewed by a specialist multidisciplinary team.

Numerator – the number in the denominator who have had the results of all assessments they have had during the past year reviewed by a specialist multidisciplinary team.

Denominator – the number of people with cystic fibrosis.

Data source: Local data collection, for example local audit of patient records.

Outcome

a) Lung function (forced expiratory volume in 1 second [FEV1]) of people with cystic fibrosis.

Data source: Local data collection, for example local audit of patient records. Appendix 2 in the UK Cystic Fibrosis Registry annual data report includes FEV1 converted from absolute litres of air blown out into a predicted percentage. The predicted percentage is based on the FEV1 expected for a person without cystic fibrosis of the same age, gender, height and ethnicity. NHS England's specialised services quality dashboard for cystic fibrosis reports the median FEV1 as a predicted percentage for cystic fibrosis clinics.

b) Health-related quality of life scores of people with cystic fibrosis.

Data source: Local data collection, for example a survey of people with cystic fibrosis using a cystic fibrosis quality of life questionnaire.

c) Median BMI percentiles in children and young people with cystic fibrosis.

Data source: Local data collection, for example, local audit of patient records. The UK Cystic Fibrosis Registry annual data report presents median BMI percentiles for children and young people with cystic fibrosis (aged 2 to 19 years) in the UK.

d) Median BMI in adults with cystic fibrosis.

Data source: Local data collection, for example, local audit of patient records. The UK Cystic Fibrosis Registry annual data report includes median BMI for adults with cystic fibrosis (aged 20 years and over) in the UK. The median BMI is compared with a target BMI of 23 for males and 22 for females.

What the quality statement means for different audiences

Service providers (such as cystic fibrosis centres) ensure that systems are in place to identify people with cystic fibrosis for annual review, and that annual reviews look at the results of all assessments the person has had during the past year and are carried out by specialist multidisciplinary teams. They ensure that the specialist multidisciplinary teams have access to equipment, testing and diagnostic services needed for assessments.

Healthcare professionals (members of cystic fibrosis multidisciplinary teams) meet annually to review assessment results and treatment for all people with cystic fibrosis. They review disease progression and adjust care as needed to prevent or limit symptoms and complications. Team members undertake comprehensive assessments specific to their profession before the annual review. These assessments may take place on the same day as the review, or at an earlier date to reduce the burden on the person. The results of the assessments are shared with the child, young person or adult with cystic fibrosis and their family or carer.

Commissioners (NHS England) ensure that service specifications require the results of all assessments undertaken during the past year to be reviewed annually by cystic fibrosis multidisciplinary teams for all people with cystic fibrosis.

People with cystic fibrosis have the results of all the medical checks and tests they've had during the past year reviewed by a team of specialists called a cystic fibrosis multidisciplinary team. This review is done every year and means that the team of specialists can see how well the person's treatment is working and whether any changes are needed. After the review is done, the results and any changes to treatment or care are discussed with the person.

Source guidance

Cystic fibrosis: diagnosis and management (2017) NICE guideline NG78, recommendation 1.5.2

Definitions of terms used in this quality statement

Assessments carried out during the past year

The comprehensive annual review carried out by a specialist cystic fibrosis multidisciplinary team includes a review of the following assessments:

  • pulmonary assessment

  • an assessment of nutrition and intestinal absorption

  • an assessment for liver disease

  • testing for cystic-fibrosis-related diabetes, from 10 years of age

  • an assessment for other potential or existing cystic fibrosis complications

  • a psychological assessment

  • assessments by a specialist nurse, physiotherapist, pharmacist and social worker

  • a review of a the person's exercise programme.

These assessments, which are components of the comprehensive annual review, do not all have to take place on the same day.

[NICE's guideline on cystic fibrosis: diagnosis and management, recommendation 1.5.2, full guideline and expert consensus]

Equality and diversity considerations

People living in isolated areas may find it harder to travel to specialist cystic fibrosis centres than people living in cities. Other models of care should be considered for such groups. Shared-care models with a local paediatric team can be used for children and young people, and outreach care for adults can be delivered by specialists at a local hospital. Routine reviews can also take place during home visits and using telemedicine in some circumstances.